Creating a Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data

Research organizations worldwide use this data to advance human health, allowing us to learn more about disease and find new diagnostic tools and treatments. While these advancements are positive, a group of more than 70 organizations, including the Ontario Institute for Cancer Research (OICR), have forged a global alliance to realize the full potential of genetic and clinical data in research. The alliance aims to establish a common international framework that will allow this data to be collected, managed and shared in an effective, responsible and interpretable manner.

“There’s some amazing, innovative research being conducted, but the knowledge generated is retained in separate institutions and not shared,” says Dr. Tom Hudson, President and Scientific Director of OICR. “We can give this science a boost with better organization and consistent technical standards.” Currently, valuable genetic and clinical data are isolated – whether it be by research organization, country or disease area - limiting its impact. The idea behind the alliance is to break down barriers so that as much data as possible can be shared and used in studies. This will also allow researchers to tackle larger, more complex research problems.

“The ability to collect and analyze large amounts of genomic and clinical data presents a tremendous opportunity to learn about the underlying causes of cancer, inherited and infectious diseases, and responses to drugs,” says David Altshuler, Deputy Director of the Broad Institute of Harvard and MIT. “However, we will only realize this opportunity if we can establish effective and ethically responsible approaches to share data. We believe that by working together, and by committing to the principle that each individual has the right to decide whether and how broadly to share their personal health information, we can accelerate progress in life sciences and medicine.”

Hudson explains that this is a unique opportunity and it is imperative to get these standards in place before current systems become too established and difficult to adapt. “The stakes are high, because if we get it right we can create new opportunities to define diagnostic categories, streamline clinical trials, and match patients to therapy. We want to make sure this is done in a global manner, and with the highest standards for ethics and privacy.”

The alliance will be modeled on the World Wide Web Consortium (W3C), the organization that brought order to the Internet as it was emerging in the early 1990s. The W3C established universal protocols for the development of websites, transforming the Internet from a niche product to the ubiquitous global system it is today. Just as W3C was needed to help the web develop, the establishment of the alliance is key to accelerating biomedical research using genetic data. “If we really want to get the most out of these massive databases we need to face the challenges involved as a global community,” says Peter Goodhand, head of international partnerships at OICR. “It will not be an easy task but looking at the list of partners gives me great confidence that we will achieve our goal. I am certain that working together we will be able to achieve much more than we ever could alone.”

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